A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Wednesday, December 19, 2012

Newtown, Connecticut

As a mother who has lost a child, my heart sank as I read the news posts of the events happening in Newtown, Connecticut.

I know some of the feelings of loss the parents are feeling, but every loss is different. I knew my son was going to die, but I didn't know when. These parents didn't know their children were going to die.

While it is a devastating tragedy, the media is continuing to report on the events of that day and the aftermath. I have conflicting emotions on the media reports. While I am glad they are keeping the public informed, I also think it is delaying the grief process the families will be going through.

I have read several articles on how to support others in their time of grief. I found this one from The Compassionate Friends, the nation’s largest non-profit self-help support organization for bereaved families after the death of a child.

• Don’t try to find magic words that will take away the pain. There aren’t any. A hug, a touch, and the simple words “I’m sorry” can offer the most comfort.• Don’t be afraid to cry. Those tears are a healthy release both for both you and the family, and a tribute to the child who died.• Listen to what the parents and siblings have to say. Let them express their anger, their questions, the pain, and the disbelief they may be experiencing. Don’t discourage them from talking about their feelings. Remember that siblings are often considered the “forgotten mourners” and need to have their grief validated, too.• Be there. Don’t say “call me if there is anything I can do.” That call will probably never come. Think of what the family needs to have done and offer to do specific tasks.• As time passes, remember the child by sending a card to the family or calling on special days. A bereaved parent’s worst fear is that their child will be forgotten.

The Executive Director had some wonderful quotes as well:

“Only a parent who has lost a child can truly understand the devastating and life-changing effect this has on the families involved."“It is said that for a parent, when a child dies, the future dies, too.”“Some people believe healing starts the moment the family arrives home from the funeral. Bereaved parents and siblings are transformed into different people who will never be the same as they were. Grief doesn’t end in a week or a year, and it may never end. But the pain does get softer in time with the help of friends who care.”

That last sentence is the most important - with the help of friends who care.

I also read a Children's Hospital blog post from a mother and a physician, who also has lost a child. Her post concerns helping kids understand what happened and acknowledges that it will take some time for them to process the events. Her suggestions include:

Tell them what happened. It is important that they hear it from you, even if they have already heard something. Give them the facts—but in a broad strokes way.

Answer their questions simply and honestly.

Make sure they know that events like these are very rare. Schools and other public places are generally very safe.

Limit their exposure to media about the shooting—especially video.

Let them know that you, and other helping adults, are working all the time to keep them safe. Give examples of how you are doing this.

Talk about something concrete you can do as a family to help—like sending a donation to an organization helping those who were affected.

Understand that they, like you, may need some time to process what happened. They may have questions—be ready to answer them. They may be upset but not even know why, so be patient if they act out in unusual ways.

If your child is very sad or anxious, call your doctor for help.

Give extra hugs. They may need it. You may too. I know I’ve been needing a lot of them.

She also provides links to resources that can be useful now and later.

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About Me

I spent 4.5 years getting a diagnosis of Niemann-Pick, Type C for my son and 4.5 months to live with it. Daniel, my little soldier, spent almost 5 years with us, Dec 7, 2006 - Nov 11, 2011. I have been blessed with a beautiful healthy daughter, born in August 2013.